Thursday, December 29, 2005
I guess it could be a lot worse.
Off we go on the antibiotic routine again. At least she is still eating really well. We are playing the adjustment game with her enzymes again, Toronto and I tend to have a few disagreements about what is best for her. I am the one changing her diapers all the time and monitoring her belly sounds daily, so ????? Oh well I guess I have to learn to trust the medical end of this disease sooner or later, but overall they have been really good with us.
Saturday, December 17, 2005
Thursday was our appointment for Annika. All the doctors, therapists and nurses didn't even recognize Annika or me, that is how much we have changed in appearance since our last trip in September.
Our little girl is 6.67 kg and 68 cm long! She has doubled her birth weight! Yes! Everyone was so proud of her, and they were happy on the progress she has made.
Annika being the little charmer that she is ,had everyone eating out of her hands by the end of the visit. We got a great mucus ridden swab, so the culture should be more accurate.
We thought this would be our last trip to T.O , we plan to follow Annika's doctor to London ( 2 hrs closer to us) but they want her back in the spring to do an infant pulmonary function test. I guess Toronto is one of the only hospitals that has the machinery to do this test. So our regular clinics will be in London and once a year we have to go to Toronto for the infant pulmonary test as a part of a large study.An amazing clinic, and no blood taken, so no crying!
St. Michael's for me..........
Well I saw Dr. Tullis on the Friday(after a huge snow storm)And I was so pleased all my vitamin levels are normal(with no supplements) My pulmonary function was 98 (with a cold) and no diabetes. I have to wait on my culture and my bone density test.
Amazing visits both ways.
Dr. Tullis also stated to use the vest only when I have a cold or a build up of mucus. I met with the whole cf team, and they were really happy with all my test results. I will continue to see Dr. Tullis for one more year, than carry over to London (she has me as part of a mutation study, so she ask to continue seeing me for 2 more visits. I agreed, anything for the cause!)
Happy Holidays to everyone.
This is the first year that I haven't gotten Christmas cards out, or outside lights up.....oh well...They don't seem as important now as they did last year.
Christmas comes every year, and we have a lot to be thankful for this year, Thanks to Jesus and the support of all our friends and family, we have two amazing kids and a great marriage. Maybe next year I will get those cards out, and the lights up.
Ho! Ho! Ho!
God Bless ye all!
Love The Hassons
Monday, November 07, 2005
June 24th -Trip to Toronto Sick Kids
One nights stay at the Delta Chelsea $109.00
Gas to Toronto $40.00
Lost income- 6 days work for David( he won't leave his babies side)Food for both of us for the 6 days- $400.00
Clothes bought (we didn't expect to be staying in T.O) $150.00
Gas home $25.00
Total cost for this trip-approximately $1500.00
Zinc cream for Annika's bum- it has to be 40% zinc oxide $9.99 tube
We use a tube in 2 days total cost to date $100.00
Pedialyte $9.00 /liter - total cost to date $9.00
Additional cloth diapers (because of the enzymes she pees more often) $100.00
Lysol wipes for disenfecting surfaces- Total cost to date- $ 10.00
Lowella soap to help with diaper rash from enzymes $10.00
Total additional costs:$229.00
July 14/15 th Trip to Toronto Sick Kids
Hotel at Howard Johnsons ( not the greatest hotel) $65.00
Dave missed two days of work
Food $ 105.00 (for three)
Prescriptions not covered $23.00
Total cost for this trip : $775.00
A few little Extras July 22/05
Lysol cleaning wipes and spray $ 12.99
Gas to and from her appointments $40.00
Month of July Updates
Good old Lysol wipes $25.00
2 portable air puriefier systems $125.00
Filters for the furnace $60.00
Filters for the portable systems $35.00
Shipping costs for meds $15.00
September 11-13 Trip to Toronto
Two night stay at Howard Johnson's $110.00 (after discount and manager's special...lol)
Gas to and from Toronto $125.00
Food for three (mom came with us to help with Annika) $175.00
Dave has been of work since August 8th for so many tests and appointments
Total is $410.00 ( which is pretty cheap because mom paid for many things...thanks mom!)
Gas to local appointments-$65.00
Total for September-$520.00
Lysol wipes/cleaning products-$45.00
Gas to and from doctor's appointment-$65.00
Annika's Nebulizer(some not covered by Greenshield) -$75.00
A new vaccuum cleaner- $100.00
Total for October -$285.00
Costs for November-A Chest Therapy Vest $12,600.00(which is not covered by any plan)
Flooring replaced or repaired-$775.00
Vents vaccuumed and disinfected-$320.00
Talley for November so far-$13,695.
A trip to Toronto- 2 nights stay- $135.00
Gas there and back- $85.00 (we took the 4x4 because of the snow storm)
Food for 2 days - $105.00
Dave missed two days of work.
Diapers(extra because we are adjusting her enzymes) $65.00
Total for December ($490.00)and the whole 2005 year-$17818.98
Wednesday, October 19, 2005
It exhausts you mental, emotionally and physically re-living all the events that added up to our families diagnoses of cf. Just when you think you are on the road to healing,* bamm* a new memory floods your senses, and those wounds are open again.
Everyone gets their fifteen minutes of fame.....but that seems like an unfair time limit. Annika's diagnoses has educated alot of people on cf, and fame or no fame....I pray we can continue to do so. So as hard as it is to talk about what cf means to us, we know we have to. We have to help the world, yes the world(one person at a time) realize how devastating this disease can be to the individual diagnosed with it, and to all those that love them.
We have our up days, but still more down ones. At times it seems easier, and in other areas it is so constricting. Some days I wonder how we will get to the next hour, let alone week. Then there are actual days where for a few hours I forget about cf. Those are good moments!
Thank God for friends and family.
Friday, September 23, 2005
The Story of 65 Roses
65 Roses® is what some children with CF call their disease because the words are much easier for them to pronounce. Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year old son, Richard, listened closely to his mother as she made each call. After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary posed the question, "What am I working for, Richard?" "You are working for 65 Roses," he answered so sweetly. Mary was speechless. She went over to him and tenderly pressed his body to hers. He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."
Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say, does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.
"65 Roses® " is a registered trademark of the Cystic Fibrosis Foundation.
Wednesday, September 21, 2005
5:30PM Cocktails Dinner 6:00 Pm
Harrow Agricultural Building (near the arena)
Dinner and DanceTickets: $25.00 each Children $10.00 (10 and under)
Dinner includes salad, roastbeef, chicken, vegetable, potato , dessert and coffee/tea.
Dance your pants off after!!!!!
Full Bar available (not included with ticket cost)
This is a fundraising event for The Hasson family. On June 24th, 2005 , Annika was diagnosed with cystic fibrosis. Three weeks later, her mother Kimberly was also diagnosed with cf. The Hasson family needs help to replace carpeting with hardwood flooring, air ducts need to be cleaned, and funds need to be raised for hospital visits and daily expenses. We are focusing on education. Cystic Fibrosis effects 1 in 2500 families. It takes both parents to have the cf gene, to pass it on to their child. Many parents are not aware that they carry the gene. 1 in 20 people carry the cf gene. Cystic fibrosis is the number one killer of caucasion children.
To purchase a ticket call St. Andrews Church at 738-4362 or
Kimberly Hasson 738-9152
Come out and celebrate life with us.
Give the breath of life. Support Cystic Fibrosis!
Wednesday, September 14, 2005
A whirlwind of a day starting with 2 sweat tests. Yep two. Toronto Sick Kids wanted to see if the results from the newer sweat test and the old method would be different.
Lynda from the respitory unit came and performed the Nasal Potential Difference (NPD) Measurements. ( http://www.childrenshospital.org/az/Site1331/mainpageS1331P0.html for an explanation of this test)
I then went on to St. Michael's Hospital for a CT scan, bloodwork, a pulmonary function test(in which I blew 121%....wink, wink!) What a crazy day
At about 2 PM I got to meet with Dr. Liz Tullis. Wow, what a great doctor. Her bedside manner is the best I have seen. What a sweet lady.
She explained that by some standards I don't have CF, but by clinical and personal standards and history I do????
The way she explained it was our bodies are like encyclopedias. Each page represents a function in our body. When someone has a cf mutation, it effects how the encyclopedia is read. For example, my daughter's double DF508 would be like tearing out 2 dozen pages throughout the encyclopedia....you can't receive the information properly (or your body can't function normally)
Where my mutations, as mild as they are ....compare to several words to a paragraph missing from the encyclopedia. Easier to piece together and read.
So Toronto wants to monitor me 2x a year. They want me to meet their dietician, therapist, and cf team, so if in the future I need them, they will be there for me.
Right now, my lungs are clear, and I feel good. No treatment needed or prescribed.
I still have to be careful. Watch that colds don't go to my lungs, etc. There are not many of my genetic makeups in studies because most symptoms are mild and people don't know they have "cf". I was only dx because of Annika. I guess you can say I will be a research guinea pig...lol
Annika's Big Day
Well my little monkey weighed in at 12 1/4 lbs ......yahoo! She has gained !!!!
She is starting to have rolls. Toronto was happy with her weight gain, and said she looked healthy. I think they were surprised by her motor skills. The little bum likes standing, jumping and when laying down arching her back in the shape of a C. She turned 6 months on this visit.
We had her started on Zantac for reflux for a few months.....I am tired of wearing puke...lol
Louise also sent her home with a script for ventilin and a neb machine "just in case" With the cold and flu season coming.
Little did we know we would be using it today.
Annika started coughing through the night last night, and hasn't stopped since. I am sure it is just a cold. She is still full of piss and vinegar!
The ventilin is helping right away. (She hates having the mask put to her face...sassy girl)
We are still waiting on her culture results to see if she is growing anything or not. I will update ASAP.
Monday, September 05, 2005
We took this opportunity to spread the word about Annika's Dance...The fundraiser supported by the three local Anglican church's...St. Andrews, Christ Church and St. Albuns. This whole weekend, I ventured to the fair with Annika in the sling and passed out flyers to perfect strangers. What an odd feeling.
When doing something like this you are mixed with many emotions. Pride for your precious child, fear of rejection, anger of ignorance, warmth of acceptance, guilt for asking for help(because you know there are people worst off in the world) You are smiling one minute, and on the border of crying the next.
So many people are willing to help, and there are just as many people there to frown on your endeavors.
Parker's birthday was fun, the fair rewarding for children's eyes. Annika bounced non-stop at the sights and sounds. Parker exhausted his Uncle Dennis out...lol
Sunday David and Dennis went on The Ride for Cf- Poker run. Dennis won a $500 gift certificate for raising the most sponsor dollars, almost $700.00. He is an Uncle with a passion.....His partner Angie helped out with sponsors( a lot). Those two are our support ( along with many others). Sometimes I think they love our kids as if they were their own, and for that I love them more than words could say. The poker run raised over $11,000.00 for Cf research. I am proud of both men for participating. So I guess life goes one....we still have birthday parties, we still go to fairs ( and eat too much cotton candy) and we still ride our bikes. Funny how life still incorporates CF into those little things........
Thursday, August 25, 2005
I then go over to St. Michaels for a CT scan and chest x-rays. When those tests are done I go on to the CF clinic and do my pulmonary function test, to check my air flow. Somewhere in there I will be doing bloodwork.
At 1pm I meet with Dr. Liz Tullis, the CF doctor, who I have been told knows a lot about mutations in the CF gene. I hope with all these tests, that she will have some answers for us.
So a crazy busy day, I am sure full of ups and downs.
Then Tuesday the 13th we go back to TSK to have Annika seen by her doctors and the rest of the crew. I pray she has gained weight. She seems to have grown taller. Now if you asked me 5 months ago "would you ever put butter, and salt into your child's cereal (let alone feed her cereal...lol)" I would have replied "are you nuts!" But we do what we have to do.
I think the hardest thing about this disease is the lost of control. Before the disease came into our lives , we had a false sense of control and security, now that control has been stripped away.
I am now vaccinating my daughter(which I still have problems with.....Especially the flu vaccination because it still has mercury as a preservative in it) I pray everyday for guidance and strength.
I am sure life will get crazier!
Sunday, August 14, 2005
I pray they find something in me that can help Annika in the future. God gave me Annika, and without her , I may have never been diagnosed?
My life changed the day Annika was diagnosed, but it has changed even more since I was diagnosed. So many questions, with no answers yet. I don't know how I feel. Numb and depressed is a start.
I have given in to the fact that I will no longer be able to do hospital births, only home births( we all know how hospitals are teaming with germs).
I am filled with hope, and my faith is strong.I will fight for myself and my daughter.
This blog will serve as therapy for me I am sure. I will keep everyone updated.
A friend told me the other day, "Think of your life as a giant maze, you know there is an exit, but along the way you will ruin into a lot of walls. If you need to be reminded that you will reach your goal, just look up" Isn't that so true, even though we run into walls daily, if we look up we see open sky, and God. We will reach the exit that is so desired....and life will go on!
Though you have made me see troubles, many and bitter, You will restore my life again; from the depths of the earth You will again bring me up. Psalm 71:20 NIV
Thursday, August 11, 2005
Destiny is the dream of your future,
Destiny is your life you wish to live
Destiny is what we want to give.
When you wish upon a star,for something near and far,
You start thinking your wish won’t come true,
But really they do ‘cause of
Destiny is the dream of your future,
Destiny is your life you wish to liveDestiny is what we want to give.
It’s all up to you,
You can choose your life’s dreamsand wishes if you want to
I can help you make them come true
Believe in yourself
Destiny is the dream of your future,
Destiny is your life you wish to live
Destiny is what we want to give.
When you think it’s gonna end
Come to me my friend,
and make another wish on a shooting star and run across a rainbow into your
Destiny is the dream of your future,
Destiny is your life you wish to live
Destiny is what we want to give.
Kaitlyn Langstaff March 2, 2003
(Kaitlyn died December 17, 2003 as a result of complications from Stevens Johnson Syndrome)
Wednesday, August 10, 2005
David's mom is a carrier of the DF508 gene.....a hard blow to take. We have to keep reminding people that no one chose to pass this gene on, it is like passing on the gene for blue eyes!(which both our beautiful babies have!)
Dennis is also a carrier of the DF508 gene, so the twins are defiantly identical(like there was ever a question of that!)
Angie is not a carrier, which means Dennis and Angie can have babies, with the possibility of their babies only having one CF gene and being carriers, not having the disease(it takes two CF genes to have this wonderful disease)
We will update you when David and I get our results from our blood tests!
Prayers for everyone!
We need a crew of people to come over and help me clean the house from top to bottom, dust, etc (MOPS has already agreed to help on Wednesday July 27) Thank you ladies!
We need an hepa filter system (Dave just bought one July 22, man they are not cheap)
A small personal air purifier for Annika's room (we have gotten two)
We need the ducts vacuumed out
We need to paint her room , so she can have a place of her own ( Thanks mom and Sherry!)
We need to start taking her, and the whole family to a naturopathic doctor.
Annika's room has carpeting, we need to strip it and place hardwood floor or a similar product in it
We would love a central air cleaner for the whole house, but this is last on our list...lol it is a little costly.
Friday, July 22, 2005
Parker has been vomiting for 24hrs, from this little bug too, but the doctor has left him to fight it on his own.
I am exhausted from no sleep, cleaning puke and pounding the mucus out of our baby girl. I have literally watched her turn purple twice now. I hate the fact that babies only have two ways of getting mucus out of their little bodies. Puking ,and swallowing and pooping it out. Mine has mastered puking. And unfortunately half her feeding keeps coming up with it.
I am trying so hard to keep her weight on.
I hate CF!
I have to give her enzymes before every feed, keflex 4 times a day, zithro one time a day , ADEK one time a day, sodium mineral mix five times a day, and the occasional dose of tylenol. This sucks.
I pray for strength, I pray for patience, I pray for my baby girls health.I pray for more weight gain, I pray that she can breathe!
If her cough doesn't get better tomorrow, the doctor is getting a call
Pray for Annika please!
Sunday, July 17, 2005
A second trip to Sick Kids is finally completed. We went caravan style. Two car loads of people who love and adore Annika.
David's twin, Dennis and his fiancee Angie were going to be tested for carrier status, along with David's mom Ann. We should get the results for them in less than a month.
Parker and Annika both had a sweat test done, and Annika had to have her blood done again to check for levels.
I hate seeing her having to be poked and prodded like cattle. I tried telling the blood technician that you can't get blood from her veins in her elbow joint, but she wouldn't listen. She blew the vein in her right arm. Stupid woman. So after several threats from me, a new nurse came in, took the blood from where I told her, and first try, voila!
I have no patience for medical staff that chose not to listen to me.
We met with the dietician, and she wanted Annika put back on the sodium mixture. This should be fun , since she pukes it up. Her sodium, chloride and potassium levels were low,(but her albumin is normal ) so we have to do a repeat blood test in a week to see if they climb.
Also the dietician stated that they normally do not put babies on the beaded enzymes, because they don't gain weight.
Our doctor here in Windsor changed her over to them. The dietician was surprised to see that Annika gained 14 ozs in 2 weeks and grew 1 cm. I asked her how much more weight gain does she want????lol. So she agreed to keep her on the beads. No more sore nipples for me, or diaper rash for her!
The doctors said they were concerned about the low levels of sodium, chloride and potassium, but as long as it stays the same, or climbs, they are fine. Dr. Sweezey said it is normal to loose those elements in the summer.
So we got to come home.
They didn't have the sweat results yet, or our genetic coding done . It was a stressful ride home.
This last appointment was long and emotionally draining. Everytime we go to Sick Kids , we wonder if we are coming home. The expenses are adding up, and the stress level is high.
We got home about 11:00 PM. and I put Parker to bed , Dave was listening to the phone messages.
Dr. April Price had called saying Parkers sodium level on the sweat test was below 10, a definite negative for CF, but Annika's levels had climbed to 82, a definite positive. I stood outside Parkers bedroom door, sobbing like a child.
I cried for the relief I felt , knowing now that Parker was negative ( a result I already knew in my heart ) , I cried for Annika finally being confirmed positive , and I cried for our future and the unknown. I feel so defeated, and so exhausted.
And the dance goes on..............
Thursday, July 14, 2005
I thank them for all their help, and acknowledge them for all they have done for the CF community, and for us.
We pray that we can be as supportive to our daughter as she dances with this disease. I hope she continues to lead.
Thank you for your advice, your compassion, your open ear, and your shoulder to cry on!
I hope I can return the favour full circle for someone else in need.
God Bless you, and your wonderful family.
3 children, first born with CF, the latter two free and clear.
It should be a crazy start to this weekend. We are going down on Thursday night, since our appointments are early in the morning. So another hotel stay, and more dining out. More picking and prodding of our babies, and more waiting for results. This is the tiring side of CF. Unanswered questions, testing, waiting, the unknown!
Besides always putting something foreign in my daughter's mouth, this is the part I dread......clinic. Will my daughter pass the tests, will she gain weight, will she have an infection, or be exposed to one at the hospital.....blah, blah, blah. My faith in God is the only thing that keeps me strong. That and my wonderful husband, children , family and friends.
I will update you on the results.
Tuesday, July 12, 2005
The Special Mother by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger."Armstrong, Beth, son. Patron Saint, Matthew.""Forrest, Marjorie, daughter. Patron Saint, Celia.""Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity." Finally he passes a name to an angel and smiles. "Give her a handicapped child." The angel is curious. "Why this one, God? She's so happy.""Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter? That would be cruel."" But does she have the patience?" asks the angel."I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off she'll handle it.""I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy."But Lord, I don't think she even believes in you." God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."The angel gasps, "Selfishness? Is that a virtue?"God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word.She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it.I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life Because she is doing my work as surely as she is here by my side.""And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles. "A mirror will suffice."
This is a heartbreaking poem......I believe God had chosen Annika to be our baby because he knew that we would love her no matter what. If given a choice of having Annika just the way she is, or not having Annika....well is there really a choice to be made? The only thing different about me in this poem is that I am a believer, and always will be. Both Dave's and my faith has grown stronger....Thank you Lord for Annika. Thank you Lord for Parker, and Thank you Lord for the support you provide. Amen.